Some days the stories are adorable, some days they are horrific, but it is all just a part of our tale!

Sunday, December 16, 2012

Special: Everyday

I’ve talked a lot in the past about taking things for granted and I’ve even claimed that I think special needs parents take fewer things for granted because every milestone is a mountainous victory. And I still think that is true, in context. When it comes to my son and autism, I know how amazing it is that he was able to read 18 sight words this past week in autism therapy and that his karate teacher said he was one of the most focused children in the class (and even complimented Caden for always being willing to give class another chance after every epic meltdown…..and boy have there been a lot of meldowns associated with starting karate). Words can’t express how overjoyed I am that he is getting to hangout in first grade for math class and even to do some literature work. He’s so proud of being able to go into the first grade classroom and his bitter disappointment over being in kindergarten again this year is lessening just a bit. Last night he spontaneously told his daddy that he loved him and then followed that with I love mommy and daddy. No prompting, no scripting, just spontaneous language. And I hold that sentence near and dear to my heart because I know that it isn’t something we were guaranteed.

But I’ve come to realize that I didn’t apply my “not taking life for granted” skills outside of the autism box. Yes I’ve come to terms that life is always going to be a balance when you have two children who don’t have properly functioning immune systems. There is always going to be a part of me that has to struggle over whether Caden should continue in his charter school where germ exposure is high but he has a chance to test and develop his social skills. I will probably worry about Ryley each time she starts a new competitive sport; are we pushing her health limits too far or is this challenge, distraction even, great for her overall mental wellbeing. So the health issues aren’t taken for granted in my mind as long as they are related to a condition they are already diagnosed with or that is associated with their diagnosis.

See I never imagined that my daughter would wake up one morning with a migraine that simply doesn’t go away. She’s on day 34 now of a nonstop migraine. I actually had a migraine the other day and the pain was indescribable; I was literally incapacitated until the migraine meds kicked in. That was one day. She is on day 34. Not only that she is experiencing the migraine on both sides of her head and they are causing memory loss, disorientation, slurred speech, and difficulty with concentration. We are working closely with a team of doctors but so far we haven’t been able to do anything to help lessen or alleviate the pain.

So is the assumption about the pain? In some regards yes. As a mother the thought of my child in constant pain is overwhelming. But the real assumption violation was about independence and development. For the last few years we have been working really hard to teach Ryley how to be safely independent. She has taken babysitting classes; we have been working on her knowing her allergies, being able to identify her medications, keep her cell phone with her at all times, and how to handle as many emergencies as we could conceive of. Remember afterall this is the child who once developed an escape plan in case wild teenagers broke into our house. But now the memory loss makes it impossible for her to be left alone. Unfortunately she remembers her former independence and hasn’t’ quite come to grips with the loss.

Neither have I though. I never dreamed that the child who was more than capable of earning As would become rendered unable to achieve those academic standards or that we would need to regress and start breaking down multiple steps for her again. Maybe the hardest part is that I have no idea if this is her new normal.

Hope is never lost in our family and I guess this is one of those twists in the journey that is horribly painful now but that will teach yet another invaluable lesson to us—nothing in life, special needs or otherwise, can be taken for granted. Every moment we have with our children, the great moments, the not-so-great moments, and every moment in between is precious time with our children. My vow is to remember how precious their lives are to me. I will be giving hugs and kisses more often than my oldest would appreciate and I will be tucking them into bed even if that means on top of the bed in one’s case since she would rather not have to make a bed in the morning. I’ll try to turn email off a bit more and say yes to silliness when I can. In short I’ll work much harder to realize that nothing on this journey can or should be taken for granted because you just never know when it will all change.

As a bonus this time, check out my lovely daughter who is the December Featured Sibling of the Month on Shout Out (an online magazine for siblings of kids with autism): Sibling of the Month: Ryley

About Me

I’m Jenn and this blog is about my family and our journey with "medical mystery alphabet soup." Our tale wouldn't be complete without our super autism service dog, Elf, our rescued fur babies, and whatever else life throws at us. Bio? Step? Adopted? Who needs more labels, we're just family around here. Some days our stories adorable, some days they are horrific, but it is all just a part of our tale.

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